Today marks eleven years since we lost our little one. The grief has changed and mutated over time. Now it is a mostly fleeting feeling that someone is missing at the table, an echo of laughter, a sense of something just there, beyond your reach. Love changes everything. I have never been the same.
(The artwork is gone and sold, but the idea is pretty fresh in my mind right now.)
I made the mistake of putting Yo-Yo Ma playing Brahms in my headphones as I sat down to write, and I’m not sure that was a good idea, as it’s nearly putting me in tears.
Man, I’m tired.
I slipped in here October 15, and I said, basically, given all that was happening, I felt a very distinct pull to hunker down, draw in, nest, rest- create more margin. We really hadn’t taken many flights of craziness or anything from Sept 1 to Oct 15- it’s not like we were running frantic helter-skelter from one activity to another, but the load felt heavy all the same. I think I was verbalizing that day that I felt like I needed to shift how I was carrying the load, as what was left was necessary and good but heavy.
How could I have known?
We had a week of re-focusing that week. Really digging down, seeking margin. Deep breaths. Re-evaluating. Lots of books read aloud in candle light under cozy blankets. That whole week James was a bit off. He was tired. He was dozing as soon as he stopped moving and bless his heart, I was wondering what was going on. He’s always tired and he does drop off in sleep and has done so for years and years but he seemed especially exhausted. We went to church that Sunday, and from my position at the chant stand, I watched him get paler and paler as Liturgy went on. He just looked awful. So much so that we left church quickly so he could get some rest, barely staying for the fellowship we usually so greatly enjoy.
He steadily got sicker and sicker. He tried to work on Monday and ended up coming home early, in too much pain and too exhausted to work. He slept through Tuesday. By Wednesday, I couldn’t keep him awake, and as he hadn’t eaten since Sunday and was barely drinking, I was concerned by the signs of dehydration I could see. Around 10 am, we went in. He was immediately admitted for a kidney stone (technically, acute kidney failure) and dehydration. Less than two hours we spent in the emergency room- we were in his hospital room by lunch. Even on extensive IV fluids and pain management , he was not improving and his pain was incredible. They decided to surgically ‘blast’ the kidney stone the following morning- emergency surgery. He ended up having to have a stent placed during surgery as well. He did not respond well to anesthesia (he has severe sleep apnea) and ended up being on oxygen until midnight that night. His response was so bad that a neurology/pacu nurse was with us in the room until almost ten pm.
I’ve been around surgery protocol for so long (both for myself and my children) and in my head I knew exactly what was going on, that he would be fine, that everyone was doing their jobs, but I’m not going to lie. That afternoon and evening were terrifying to me. It was a sudden picture of what might/could happen if they couldn’t get it figured out.
I can handle that in my kids. I did not handle it well in my husband. I was having a hard time compartmentalizing (as I usually do with my children) my care giver role while watching the love of my life suffering and being flat out unable to do anything to ease it.
I wrote the above nearly two months ago, on Nov 29.
He’s fine now. He recovered well.
He pursued better primary care and has been doing a whole bunch to address his health since; things we had sort of shoved to the back burner with all the challenges we’ve faced with Elliana and Josiah. No longer.
My paradigm has shifted again.
That’s the thing about life that never fails to surprise me. You think you’ve got it all figured out, learned all the hacks. Swerve and duck and dance. Life laughs back at you and pulls a left hook you couldn’t imagine out of nowhere. Sometimes it’s a nice left hook and sometimes it’s a real mean one. You just never know when to look for the swing.
Life has been, well, (whispers it softly)…kind to us…the last two months.
James’ recovery went well, we had some time away for Christmas, our schedule has been light and just right for us. It let us all take a good, deep breath and it has been a lovely feeling.
I can’t shake the experience I had at James’ hospital bedside that day. Isn’t it weird how sometimes reality has been reality for much longer than we’re willing to admit it has been? I’ve sort of been running from a calling for a long time, so long, really, that I couldn’t even see it as a calling. And yet it gently edged its way back into my heart that day. Yes, it was a terrifying day. I won’t deny it, I don’t think we should, really, when medical trauma happens. It is scary. But it was also a reminder of all the gifts this long journey with two chronically ill children has given me. Yes, I said gifts. Maybe the better word is tools? Both a gift and a tool perhaps?
I think, for lack of a better word, I have been called to be a healer.
I won’t ever be a doctor or a nurse, but this idea of creating space for healing, of being the person that sort of channels that for another? That really resonates with me. It calls to mind the idea of doula, but not in birthing babies- birthing space and kindness and peace for someone who is ill or hurting. I’ve realized that this long, deep, dark journey with illness has given me eyes to see what others often can’t; ears to hear (and translate) what is confusing and complex for others; hands to soothe and work and love.
I used to abhor hard work- cleaning. Scrubbing. Laundry. Somehow in all of this journey of the last four years, that has profoundly shifted for me and I welcome the feeling of setting things aright with prayer and elbow grease. My dear friends Tonia and Elise taught me ora et labora (pray and work) for so many years, but the lessons didn’t sink deep until I walked through the shadows and storms. To be able to use my hands to bless and my heart and mind to pray is a gift; a gift that is not afforded to all. It is a gift to become these things for my children when they cannot- for my husband when he is ill- for others- to give them a soft space to land.
This all became super salient and fresh in my mind when my dear, dear friend fell ill just before Christmas. She was seriously, seriously ill. She has spent the last month in and out of the hospital. Glory, glory, glory to God, she was able to come home just yesterday. I think of it and literally want to do a little shuffle dance of joy to think of her home.
All of these gifts have been brought to bear in loving on and supporting her and her family while she was recovering…gifts I never would have had to give if it hadn’t been for all the dark waters we have been brought through. Things I never would have thought of, or seen, in someone else’s illness, had it not been for what our family has been through. Like a special pair of eyeglasses.
It’s truly given me new visions of what the future might look like for me and my family, and that’s kind of exciting. No matter what may come, I’ve got this little toolbox in my back pocket to pull out as needed. I have something to give to the world in its pain and its hurt instead of just standing agape and at a loss for what to do. Ora et labora. I can listen. I can make space for healing and stillness and serenity and hope and all of those things that the world so desperately needs more of. This is my calling: Sing while it is still dark.
I’m not yet sure how this will turn out, but that’s the beauty of blog writing – it’s an invitation to enter into the middle of a story without the pressure of either having to know the beginning or close it up neatly.
One of the most stunning mysteries a writer discovers, if one puts any effort into the craft, is that ninety times out of a hundred, the audience and the reason for writing are rather secondary; the first priority is to pin those elusive, wriggling words floating around the brain down on paper where they can’t run away anymore, bring them into the light, find the shape of them. The shapes only heft into view after much wrangling, and even then, they are fuzzy, out of focus. You have to take hard looks all about before you get a clear view.
A writer’s prayer: give me clear vision.
My previous post has been haunting me since I published it. I thought I knew why I was writing it. I thought I understood the audience: the mysterious and not so mysterious dear readers who stop by whenever I have something to say, bless their patient hearts. I am realizing though, that every missive published here is a letter more to me than to the universe; if any audience could really be named, it might be my children.
Maybe I am writing to the child in myself:
Here is the world. Beautiful and terrible things will happen. Don’t be afraid.
Here is the world.
I don’t think I realized what a slow processor I was until Emily began writing about it a year or so ago. I used to think my time delay was unique to me and was always discouraged and berating myself; I’m incredibly heartened to realize that there are whole tribe of people who react the way I do to the world. I used to think it was a curse. I am beginning to accept it as a gift.
The words I laid out here the other day are taking further shape for me, haunting me, pushing me.
A writer’s prayer: give me clear words.
They are not easy to choose.
I live between so many worlds. I think I’ve always known that, always known that I live in the outskirts and margins of places, tucked into quiet pockets. But I don’t think I realized how profound the remove was until Election Night.
There is no way to describe what happened on November 7 in the our national pysche. An inchoate howl? A keening? A roar? A clamor?
A writer’s prayer, a mother’s prayer: give me courage.
Beautiful and terrible things will happen.
I was awake in that weird dawn because of a child who cried out in the throes of a nightmare.
Having tucked her back in, I wondered at the results, unclear as they were before I headed to bed, and so I checked in for a moment. I should have waited for the morning. I couldn’t fall asleep after that; I just sat in mute horror as I watched the noise scroll past my screen until you wanted to clap hands over your eyes, as if it would block it out.
I stood and watched in horror as blog post and news article immediately began to circle in the wee smas before most rose from their beds, so very quick to censor the pain, the anger, the hope, the triumph. The level of noise, the words, every writer so quick to put spin on something un-spinnable, barely nameable, so new in its infancy- the speed and clamor of it all upset me far more than the actual election results.
You are talking about humans! I wanted to scream. You are talking about your friends! You are talking about people you love! You are talking about people who are loved! You are talking about your mothers and daughters and sisters, you are talking about your fathers and sons and brothers. You are talking about your friends who you eat and drink with! Real flesh, real blood. Be wary, be careful. HUSH!
I have echoes of this reaction every time a major event happens in our nation, not just on Election Night; good or bad, but especially when some sort of trauma happens, especially if that trauma has roots in dehumanizing behavior (like a mass shooting). It troubles me that our humanity is subverted for a quick newspaper title, a five second sound bite.
The mama in me wanted to escort everyone to their rooms, remind them to take deep breaths, tuck them in, kiss their foreheads. Tell them we’ll talk about this in the morning. But you can’t do that, and it’s not my place. But that’s where I was. What I wished I could do.
How many times I have told a child, (how many times have I told myself?) to find peace before they said and did things they could never walk back, never undo, never unsay? It was like watching such a regrettable moment writ large across a national consciousness.
A writer’s prayer, a mother’s prayer, a believer’s prayer: help me to see.
In my last post, I was writing to all those many people who poured out words in that dark, early morning. I realize that now.
I was writing to myself. I was writing to the parts of me that want to offer a quick fix people’s pain, people’s emotions, people, period, because being human is messy. People are messy. Being a human, being in relationships with humans- it’s rarely comfortable. It can be as beautiful or as ugly as we chose to make it but it will never be perfect. Or easy.
Don’t be afraid.
The odd dichotomy of enduring through suffering is that it leaves you scarred but makes you fearless. Once your worse fears have been realized, the rest of it doesn’t quite seem the big hairy problem you thought it was. If you will allow it, suffering will also allow you to see the scars written all over your fellow humans. It will soften you. It will humble you. It will gives you eyes to see, ears to hear.
I’m not afraid of people’s pain as I once was. Perhaps more importantly, I am not afraid of people’s suffering or the fact that answers don’t come easily. I had to live through it to understand how strange a world can be.
So how, then, shall I live?
I think of my children again, the people, the humans I want them to be, that they already are, the world I want to give them, the world they are finding within themselves.
It was the words of comedians and poets that brought it to clarity, the shape finally named.
It is usually to them I turn to when I cannot find the words.
This, from Jim Gaffigan, comedian, Catholic, father of five:
All I want for Christmas is for my country to not get divorced.
— Jim Gaffigan (@JimGaffigan) December 24, 2016
This from John Blase, one of my favorite poets bar none, wanderer, father of three:
That’s kinda where my head’s been, seeing myself standing in a room full of people much like that final scene in It’s A Wonderful Life, looking around at the eyes gathered, with a goofy George Bailey look on my face thinking “How on earth did I get here?” And then that old familiar pain: I remember that something has to die in order for something to be born.
And so I write, a letter to myself, a letter to my children.
We are the Children of the Great Divorce. We live in the now and not yet. Between heaven and hell.
And all the time — such is the tragi-comedy of our situation — we continue to clamor for those very qualities we are rendering impossible. You can hardly open a periodical without coming across the statement that what our civilization needs is more “drive”, or dynamism, or self-sacrifice, or “creativity”. In a sort of ghastly simplicity we remove the organ and demand the function. We make men without chests and expect of them virtue and enterprise. We laugh at honour and are shocked to find traitors in our midst. We castrate and bid the geldings be fruitful. – CS Lewis, The Abolition of Man
I had forgotten what this meant for many years, but Aslan’s name is whispered. Let us, dear ones, my children, let us be of courage, men and women of chests.
Ye can know nothing of the end of all things, or nothing expressible in those terms. It may be, as the Lord said to the Lady Julian, that all will be well, and all will be well, and all manner of things will be well. But it’s ill talking of such questions.”
“Because they are too terrible, Sir?”
“No. Because all answers deceive. If ye put the question from within Time and are asking about possibilities, the answer is certain. The choice of ways is before you. Neither is closed. Any man may choose eternal death. Those who choose it will have it. But if ye are trying to leap on into Eternity, if ye are trying to see the final state of all things as it will be (for so ye must speak) when there are no more possibilities left but only the Real, then ye ask what cannot be answered to mortal ears. Time is the very lens through which ye see — small and clear, as men see through the wrong end of a telescope — something that would otherwise be too big for ye to see at all. That thing is Freedom: the gift whereby ye most resemble your Maker and are yourselves parts of eternal reality. But ye can see it only through the lens of Time, in a little clear picture, through the inverted telescope. It is a picture of moments following one another and yourself in each moment making some choice that might have been otherwise. Neither the temporal succession nor the phantom of what ye might have chosen and didn’t is itself Freedom. They are a lens. The picture is a symbol: but it’s truer than any philosophical theorem (or, perhaps, than any mystic’s vision) that claims to go behind it. For every attempt to see the shape of eternity except through the lens of Time destroys your knowledge of Freedom.” – CS Lewis, The Great Divorce
Be kind, my dears. Be compassionate. Choose love and life every time. Remember that the first commandment is to love God, and the second is to love your neighbor. Always choose love.
If we are going to be destroyed by an atomic bomb, let that bomb when it comes find us doing sensible and human things — praying, working, teaching, reading, listening to music, bathing the children, playing tennis, chatting to our friends over a pint and a game of darts — not huddled together like frightened sheep and thinking about bombs. They might break our bodies (a microbe can do that) but they need not dominate our minds. – CS Lewis, On Living in An Atomic Age
I add, here, dears, that atomic bombs and microbes have different names sometimes; but you know them all by how they are called the Other. The articles preceding the nouns are all “those” and “thats” full of fear. Those people. That thing different from me. Let those and these and thats find you at peace. Find you loving and doing and praying.
The blessed Father St. Anthony put it this way:
“A time is coming when men will go mad, and when they see someone who is not mad, they will attack him, saying, ‘You are mad; you are not like us.’”
Pray for peace, dear ones. Do not go mad.
The blessed Father St. John of Kronstadt said this and it is ultimately my hope and prayer for you, for me, for your father, that we would chose the real world:
“There is, my brethren, a true, real life, and there is a false, imaginary life.
To live in order to eat, drink, dress, walk; to enrich ourselves in general, to live for earthly pleasures or cares, as well as to spend time in intriguing and underhanded dealings; to think ourselves competent judges of everything and everybody is—the imaginary life; whilst to live in order to please God and serve our neighbors, to pray for the salvation of their souls and to help them in the work of their salvation in every way, is to lead the true life.
The first life is continual spiritual death, the second—the uninterrupted life of the spirit.”
Here is the world. Beautiful and terrible things will happen. Do not be afraid.
With more love than you can ever know,
The day started out on the completely wrong foot. Usually it’s the children that are off and I am the one soothing and straightening and brokering peace. But what happens when it is mama that is off? I couldn’t even explain why at first. I just knew I was vastly unsettled, struggling to focus, struggling to be present in my parenting and helping the children with their school day.
I kept trying to focus, kept trying to push through.
At lunch, my husband noticed something was off. He is an incredibly perceptive and patient listener. Slowly, bit by bit, with his kind ear, I was able to bring into the light and name a fear that I didn’t even realize I had until he granted me the space to bring words to it. Just like that, the day shifted back into more normal lines, the thing unsettling me named and dealt with. His precious gift to me in the midst of a busy, full Tuesday.
Truth is a strange companion some days.
I was thinking about President Obama, of all things, and his Blackberry. He has spent eight years within the guarded space of the Secret Service, and hasn’t been able to tote a smart phone on his person his entire presidency. When he entered his Presidency, Blackberry phones were the crack du jour, the precursors to the smart phones we all carry around now. There were very few apps; social media had yet to hit full zeitgeist. He noted how hard it would be to give it up at the time. I would love to be a fly on the wall as he enters private life again, at least insofar as it goes as he enters the smart phone/social media world at his fingertips. Will he find the onslaught difficult? Will his time away help him to quickly find a happy medium, sort what is important and what isn’t?
This, in my typical rabbit trail thinking patterns which are never explainable or reasonable- I’ve just learned to hold on tight and enjoy the ride- led to a whole host of thoughts- about the election obviously- but it eventually led to a historical novel I’ve been reading, which has a returning soldier in it. I got to thinking about how soldiers even now struggle to re-integrate into society after serving in a tight knit military community, whether in peace time or in war.
I have railed against the very regimented-ness of the military many a time when I really wanted my Dad present at a life event he couldn’t be at, because, military. They may not be able to call their souls their own in many ways, but military life is very predictable. You have to wake at a certain time. You always know what to wear. You always know where you have to be and when under every circumstance. You know when your next meal will be. You know when you’ll have free time. Even on the worst of days in the worst of wars, you have a purpose and a plan.
Bear with me, but I kind of feel like a returning soldier at the moment.
I’ve come off the front lines, so to speak….
It’s when you realize that everything is different and nothing is different and why do I keep checking my phone? Why do I keep cringing when I hear someone step on the porch? It’s because that’s the sound that is made when mail is dropped off and mail is rarely good- so many bills- and I’m actually reacting to a sound?!? When you realize that you can put the phone down. In another room. On the charger. You’re not constantly having to track down a doctor, constantly on the phone with insurance. (Though there are still days…) Constantly text with your husband about this crisis or that crisis. You can use the phone for happier things. Enjoy a laugh. Reconnect with friends. You realize that you can, you must take an hour and draw. Paint. Read. Shower. You realize that you can make that healthy delicious food you’ve been craving but have had no time or resources for. You can take a walk. Or five. You can take a whole weekend and sew a dress, because you want to, because it is important to you- you really like a dress you have but can’t find anymore like it- and necessity is the mother of invention- and it’s okay. You can breathe.
It’s harder to adjust to than you might think. I find I’m asking myself “why am I doing this?” often these days- and I’m making sure to listen carefully to the answer. It’s a sorting process. Oh, I was doing this thing this way because of xyz and that isn’t true anymore and I can do it differently. Or not at all.
One of the most nebulous struggles, post-trauma, I think, is that you realize you have a whole spectrum of feelings and emotions again. It’s why Post Traumatic Stress Disorder is so prevalent in first responders and soldiers- trauma forces you to stay very much in the now whether you like it or not; there is no thinking to yourself, whoa, this is really awful- this scares me- this makes me angry- I’m confused- I’m hurt- I’m on overload- you can’t. You just put one step in front of the other, deal with the now. All the rest of that comes later. The brain literally rewires itself after being under siege for too long, shorts out in a manner of speaking. And I can honestly say that I’ve forgotten that it’s okay to feel, which is the direct correlation to what happened today. I had the time to absorb, process, and respond to something, but I couldn’t name the truth that was being revealed to me because I had forgotten that I could. Saying to my husband that I’m afraid about ——— clicked a neuron back into place in my head, I swear. Oh. That’s how I’m feeling right now. Here’s what I can do about it.
Truth has been standing there all along, in the waning light of an afternoon. I’m just learning to see it again.
Children have this strange way about them of seeming both ancient and brand new. It is strongest when they are tiny babes in arms, but they never really lose it; I can catch a child of mine deep in thought and he seem a thousand years old, and then he’ll turn and seem younger than his chronological age. It’ll always take your breath when it happens. The intensity of the responsibility of shepherding such a soul can take your breath too.
I find that we are entering into the first days of autumn quite weary, all of us. In some ways, this makes no sense. We’ve had a an exceedingly quiet summer with very few medical challenges. On the other hand, it makes perfect sense for us to show all the strain and weariness–we’ve finally been able to stand still, all of us. We are no longer being bombarded with one piece of bad news after another, no longer having a sibling disappear into the hospital for days on end, no longer scrambling. It is only now in the last month or two that we begin to realize just how intense the battle was.
The children are all grieving and healing in different ways in a way that drives me to my knees in prayer daily. I can live in my adult brain for a while and speak to myself about the challenges I am facing and help myself process through what I am seeing and feeling- and I forget that children don’t know how to do that unless we teach. It has been an intense learning curve, yet again. I am listening and I am sorry (for)… are daily said here. We are learning new paths. I think the saddest part of our American culture when it comes to grieving is that we force the punch line far too soon, and I am reminding myself of this when shepherding my children. There is no straight line to healing, and healing isn’t a destination. It’s a journey. Their pain is not trivial, either. It is very real. It may not match what an adult might consider painful, but that does not make it any less so. I find I have to consult with that ancient wise little girl in my own head often these days, have her remind me of what is to be a child.
I find myself contemplating what my native soil is now. The storms of the battle dreadfully uprooted so many things; it is disconcerting. If I feel off-kilter and struggling to find a new center, how much more so my children? One of the saddest things for me in regards to all that has happened is that due to the intense pressures we were under, I had no time to mark or grieve or process or transfer a child’s last passage from babyhood into toddlerhood, and another child’s passage from toddler to child. We didn’t have time. It’s gone now. I’ve felt the lack of it, and both children have too. These milestones and rituals are important; they help us fix our compass for the next stage of the journey.
I had barely stopped breastfeeding Ellianna by mere months when all her troubles began. She is our youngest and of course there is some unconscious spoiling we all do, but it is not helped by the fact that she is so small; in physical appearance (due to her illness) she looks about three and a half. She is a full head shorter than children of the same age. I find myself constantly having to remind myself that she is not a toddler- she is an incredibly whip smart kindergartner, and I should shepherd her as such. Josiah was barely beginning kindergarten when it all began, and he is now seven. I find myself contemplating how I might help both them and myself re-calibrate and mark this transition now, because I think it would be a healthy thing for us all. We won’t ever pass this way again, either as parents or as siblings, (unless we adopt or foster at some point, but that doesn’t seem in the cards for us at the moment), so how best to honor it? It is something to think on.
If there is anything my children’s grieving process is teaching me, the lessons I want to carry home to that little girl child tucked deep in my soul- I want to remember their resilience and their patience. Kids have this way of grieving loudly, openly, and in such a way that makes you think that they’ll break their hearts at it, and then half an hour later they will be joyfully laughing over some joke their brother told, just as loudly and openly. But kids don’t see a dichotomy there. They can be sad and happy and one does not preclude the other; it dwells and comingles equally within them. They are so much more resilient for it- they aren’t forcing their feelings, their grieving, their joys, into prescribed boxes- they just live it out. Josiah has taught me joyful patience. How many times has he undergone something physically painful, seemingly endless, and he waits quietly and joyfully? Always waving a hello to the nurses with a bright smile, always finding something to giggle over. There are certain things he cannot do, must watch his siblings do, he on the sidelines, and he doesn’t look after them longingly. He plops down and starts inventing worlds in the dirt with his cars. I am learning to plop down with him. He seems most ancient in those moments- he that has learned a lesson few adults can master.
This is the secret parents know. We are given the awesome responsibility of shepherding these souls for a time, but the greater reward is how much they will teach us, in return.